In the final arc of the David Fincher’s film of Fitzgerald’s The Curious Case of Benjamin Button, the eponymous character has reached old age, but has the outside appearance of a feral boy, found at the stately retirement home he was adopted in. The love of his life, now an old lady herself is called in and begins caring for him until his last days: through to toddler and then infant and then… nothing. This plot twist is one of many coats hung on the slim original narrative and certainly feels like it’s been poorly sewn together by the screenwriter, but it is also a poignant reflection on the emotional devastation of those having family members reach moderate and severe levels of Alzheimers and senile dementia.
I’ve arrived home from work, and after greeting my father-in-law and asking after his day I sit down to unwind with a game on the computer. He sighs, then begins rubbing his hands to warm himself, even though it’s a mild Autumn afternoon, and the heating is on. He taps his feet, tap tap tap, looking down at his shoes, then unties and reties them, returning to rubbing his hands so much I fear creamed corn will appear in them. Finally he stands, walks to a stack of newspers and asks me about the recycling. I mention we’ll do it at the weekend, as we always do, and he nods gleefully before gathering up a stack, stuffing them under his arm and says ‘Right, I’ll get this first lot then!’ and walks towards the front door. I stop him, saying they should go in a bag, and besides, I would have to go with him, and we might as well take out all of the papers. He agrees this is a good plan, and then heads towards the door anyway.
A few minutes later, we head out together, him with his own bag of newspapers and I with mine. He looks both ways as we go out the front door, and I point right, which is the direction we’ve gone to recycle the papers once a week for 22 months. The recycling bins are only 100 yards around the corner, but he expresses surprise as they come in view. As I have most weeks I remind him it’s the bin with the blue lid. Despite there being a large slot in plain view to put the papers in, he tries to lift the lid. When I explain it is locked, he gets out our housekeys. After I dump my bag out of papers through the slot to illustrate, I step back and let him do his bag.
He begins putting some in, then, as the bin is quite full, decides he needs to make room, taking a small stack out and folding them carefully to put under one arm, while with his other hand poking with a rolled up paper at the stacks within. Sometimes he has to take out more than he put in, and drops them, along with the ones under his arm. The process of putting the armful of newspapers he had in his bag in the recycling bin takes about ten minutes. I haven’t seen him this happy in ages.
As we head back home, he stops ten feet from our front door and turns, keys held out to the wall. I nod towards our door and he grins and thanks me with a ‘Yes, of course.’
Just after Christmas 2011 my father-in-law came to live with us not long after having been officially diagnosed with moderate Alzheimer’s and vascular dementia. We knew it wouldn’t be easy, and it hasn’t. We knew it wouldn’t be like we expected, and it wasn’t. We knew what we were in for, and we didn't. We soon realised that although we knew he had been masking certain symptoms in the years up to his diagnosis, it had certainly started earlier as his various capabilites toppled down steadily and surely.
As noted in a previous log, he had started heading out on his own, despite clear warnings on the danger he was putting himself in. He would zip out and in each case fortuitously found by an arriving home help, hired afternoon companion, or myself or his daughter. He would excuse his going out as ‘going to the doctor’s to correct this wretched (insert medical condition here)’, or heading to the regiment to get answers to a wide variety of things from his past. (This included plans to get to France to find the brother of an innkeeper who knew the housekeeper of his Uncle, who could tell him where his Uncle was stationed during the war. He’d be able to get to France via talking to the man he met on Remembrance Day last year: this happened to be the Scottish Prime Minister.)
The outings were then replaced with just going back to bed, which made things safer for him, but added to his confusion when awakened by a ‘stranger’-- one he’s seen several days a week for over a year-- and he would lash out in anger.
In March, we decided it was time; we couldn’t burden this responsibility and we needed to get him somewhere he would be safe from himself. This turned out to be much more difficult than we thought, as getting him into permanent care involved financial disclosures which could not be acquired until his wife agreed to terms of support. His wife who turfed him out of his house when his dementia became too difficult to handle, then threatened suicide or harm to us if we didn’t ‘send him back home’. By March we were only communicating with her via lawyers, and the discussions only reached begrudged agreement 6 months later.
You watch movies and tv shows and plays and you get these characters who you boo and hiss at and get vicarious enjoyment out of their comeuppance, or a frisson of understanding when they get away with their crimes. In reality, it doesn’t matter if they get caught or get away with it: the damage is done. I never in my lifetime thought I’d find myself typing this phrase out, but: My mother-in-law is evil.
About a year or so after he came to live with us, the old man stopped bringing her up in conversation. Had forgotten she even existed, except the times he assumed his daughter was her, and reacted in rage to percieved slights and badgering. By then, he had forgotten he had dementia. His ‘wretched memory problem’ became ‘oh, I’ll have to dig up the paperwork for that’ or an immediate change of subject. When frustrated at repeated attempts to leave the house on his own and not believing that he would get lost walking around the corner, I illustrate his condition by taking a few coins out of my pocket and asking him to count them. Or asking him what the date was, what date the newspaper he just read said it was, or even to tell me the time on his watch. Only then would it sink in, briefly, sending him into a quiet funk relieved soon after by a short nap.
A few days after his 78th birthday, as well as days of anxiety on his part that were all the signs of another unsafe wander on his own, he arose as we were having our morning breakfast of coffee and cigarettes and demanded that we take care of what was wrong with him, that something was happening. As we tried to ascertain what it was via our normal method-– asking if he felt this or that, there or somewhere else—- he suddenly seemed to doze off, answering our questions in a small faraway voice, only with words that just didn’t connect to the questions, then soon not replying to his daughter’s queries, and only mine. As his morning care worker arrived and also confirmed the emergency number should be called, I checked to see if he could raise his arms and we realised a stroke was occurring. A transient ischaemic attack or TIA was the most likely prognosis, although this has never officially been confirmed based on the tests of the local hospital. Although he was back to his ‘normal self’ not 45 minutes later when the ambulance arrived, his cognitive orientation proved to have dropped, with answers to a Mini mental State Exam (MMSE) retrieving a score of 8 and then a few points above several hours later.
I was talking about this recently with a friend, and we discussed the concept of our perception of ourselves, and our place in existence, how it relies so much on outside cues. The old man’s disease meant that despite us telling him he had dementia, the concept of it just wouldn’t line up with what his mind insisted: he couldn’t tell time because of course, there is something wrong with the watch, or clock, and isn’t it about time to get his eyes checked? He was living with us because oh look, a castle. The city he was living in, well, he’d have to check his records, and it might also mean going to the barracks to confirm his deployment. The mind plays funny tricks on us when it wants to, when we want it to.
Watching the old man going through this has often reminded me of a time I watched this happen in reverse, when a person’s mind healed itself.
In my late 20s I had a friend living with me before and after his brain surgery. Chris was an accomplished fiddle player I’d admired, and got to know via his soon to be ex-girlfriend, as well as seeing his band’s gigs at local café’s and pubs across town. We would strike up conversation which grew into friendship. A car accident at a young age had caused brain damage that resulted in occasional epileptic seizures. As these became more frequent, he agreed to be part of a new treatment: the section of his brain that had been damaged would be ‘killed’, and a third of his corpus callosum would be severed: the idea being that as he healed the reconnections would rewire and stop or ease the seizures. Only a couple of people had had this treatment at this time, with mixed results, but it was a case of do this or die. After his surgery, Chris returned home and began to heal. He couldn’t say the names of things and people, only describe them in a roundabout way, but once told what or who it was, he’d write it down and eventually remember. His playing hand had a tremor, and he couldn’t remember how to play music: none of the hundreds of tunes he knew could come to mind. The seizures had stopped however, which meant that he could return to the other love he had that epilepsy had prevented: drinking.
Eventually, one afternoon, I woke after my night-shift schedule to hear the sound of his fiddle tuning. I leaned in a doorway, looking out our back porch, as Chris began playing. One querulous tune led to another, led to more. Some just scraps as he checked to see if it was there, others old favourites played out.
I will never forget these few hours.
Nor the night a few weeks later, as I helped him to his bed, kicking empty vodka bottles aside, and the call I made the next morning to his parents, who collected him to deposit him in a drying out clinic.
Nor the afternoon I next saw him, several years later, sitting in my favourite hidden back porch corner at my favourite café. We greeted each other with obvious joy, and shared what had been happening to us in the intervening time. For him, he was composing music for the first time. He was tutoring fiddle players. He was sober. And, when he felt like it, he could go sit on a bench overlooking the Pacific and meditate until his senses matched that of coming out of an epileptic seizure: colours spectrum switching, sounds stretching and contracting, smells deeper and richer and conversations with the unknown. He was in a stage of his life perfectly content and happy. A year later Chris was dead from heart failure, which I can only guess was due to overtaxing this part of the brain.
Another TIA combined with an urine infection hit the old man a few weeks ago, which we discovered on picking him up from respite. As he went through treatment in hospital, a space cleared in the care home we hoped to have him in, and last Friday we shipped him over. While visiting him in hospital and walking around the corridors for some exercise, he turned to me in the middle of the conversation we were having about his inspection of the non-existent trains outside and said ‘One thing that is for certain, that gnarl is an absolute genius!’ I remarked on it with modesty after pointing out that I am gnarl, and he grinned, ‘Yes, of course!’
He has settled into full-time care with fellow old military men, holding court and joining in on activities, in between naps and tea breaks.
If someone you care about or for has the symptoms of dementia, the Alzheimer's Association provides invaluable support and guidance. US, UK